Posts Tagged ‘AFO’s

We’ve reached an interesting place in Drake’s Ponseti treatment. He’s in his first pair of “toe-lift” shoes now that he’s toddling around. For the first time, we’ve started having trouble with rub marks and pressure sores. He’s also at the stage of fighting me when putting on his shoes, and you can’t really reason with a 1 year old. Waking up to shoes being kicked repeatedly into a crib slat while a chorus of “ow, ow, OW, OW, OWWWWWW!” is screamed is also awesome at 6 am on Sunday.

Because the goal is always to stop the red marks from becoming blisters, parents are told to watch for bright red spots that don’t fade away after 20 minutes at the start of the bracing period.

When I called his doctor’s primary nurse, I was told to try these things and then schedule an appointment with the doctor if nothing worked.

1. Thicker socks.

2. Remove the “pressure saddle” (white plastic curved piece that fits over the middle strap across the ankle) so the straps would tighten futher and reduce any slipping.

3. Cover red marks with the blister cushion band aids or fabric style band aids.

4. Make sure all straps are tightened as tight as possible.

We are very strict in his brace wear. There’s always a possibility of relapse, but I would hate for the reason to be my not following protocols. I didn’t realize how much I’d miss the 3 month checkups. After 1 year of treatment you go to annual visits, it was nice to “check in” and hear we were doing great last year.

Today was Early Intervention evaluation day. I did like our evaluator, but I have to say I’m starting to think my state’s rules on qualifying really suck.

Based on our post-eval discussion, I think D is going to end up one of those kids stuck in the in-between. I honestly feel like finding an isolated spot and just screaming at the top of my lungs for an hour. There is nothing more frustrating and scary than knowing your child needs help and being scared you won’t be able to provide it.

She agreed to some of the same issues I believe we need to be concerned with and even brought to light something I hadn’t yet caught on to.

Of course his NICU follow-up report came in the mail TODAY. Two hours after it could have been useful.

So GRR universe. My body may have failed my son, but I’ll be damned if my mind will. He WILL get the help he needs if I have to work three jobs to get it for him.

I haven’t felt this angry and frustrated since the day I got the Synagis appeal denial letter last fall.

We should hear by the end of the week if he qualifies. Because he is performing at the low end of his adjusted age. He may not qualify for EI until after 24 months. I do not want to wait until he’s 2 to address gross motor and speech delays.

Tomorrow, I will start investigating private options, how our insurance would handle it, and obtaining the referrals needed.

A search term of “Mitchell brace” recently directed a visitor here. Sometimes my issues and his issues of prematurity overshadow Drake’s journey in his clubfoot treatment.

Our course in some ways has been very straightforward, and so far this first year has gone as well as can be expected. Our start in his treatment was a bit different due to the circumstances of his early birth.

From my research into this condition, a diagnosis is usually made sometime during ultrasounds that occur after 30 weeks. Because Drake was born at exactly 30 weeks, we did not receive the early diagnosis that allows parents the time to select a specialist and make a treatment plan.

On Day 2 of his NICU stay, I was waiting for my wheelchair ride to take me down to the NICU. I was starting to feel a bit clearer as the medicine used to unsuccessfully halt my early labor was leaving my system. Although still a bit shaky from the emergency c-section and unexpected birth of my son, as well as those fun hormones.

My husband and some of the grandparents had gone down to the NICU to see Drake and give me some privacy for my doctor’s rounds. Suddenly, I overheard “they don’t know what’s wrong with his foot yet, but they had a hard time straightening it for the footprints.”

Say what? I LOST IT.

My infant son who still had seriously high jaundice levels, who was still on CPAP, and who I hadn’t been able to TOUCH yet had something wrong with him. Not to mention other people knew about it, but I didn’t. My husband had to send everyone away to calm me down.

I have pictures of Drake that show his foot as it looked in the NICU prior to the stretching exercises that PT had us and his nurses doing with every diaper change (6-8 times daily) as part of his cares. For now, they still feel really intimate so I’m going to keep them private.

We didn’t receive a diagnosis of clubfoot until my discussion with PT just prior to his NICU discharge. We left with a referral for an Orthopedic surgeon, and instructions to continue his stretching exercises 6-8 times a day.

Drake is being treated by Cincinnati Children’s Orthopedic team under the Ponseti method of treatment. He received serial casting, heel tendon release, a final three week cast, and 23 hour/7 days week bracing. He’s now in the sleepy time only phase of treatment that will last until he’s 4 or 5.

He is in the John Mitchell Shoes with Ponseti Bar manufactured by MD Orthopedics. It’s the 3 buckle sandal type of shoe. As a wiggly 1 year old, he is much less fond of laying still for his shoes to be put on, which has led to a “Night Night shoe” song and a double team bedtime shoe routine.

There were a few things that were very hard for me during the casting phase.

1. Seeing my newborn in a cast. Even after the NICU, I sat in my car with him in his carseat and just cried after that first cast. I had to call my mama.

2. The looks from other people who realized my tiny infant was in a cast. Ask don’t stare people! That goes for any child with a medical condition. Ask POLITELY, and most parents will gladly educate you unless we are having a very bad sort of day.

3. Soaking that thing off and keeping it wet during the hour drive to the doctor’s office!

The following are the resources I use to gain knowledge about his treatment and support from other parents. I hope this helps other parents on their journey with this congenital birth defect.

Ponseti International – Named for Dr. Ponseti who developed this treatment, and trains medical professionals worldwide

No Surgery for Clubfoot Parent Yahoo Group To discuss non-surgical methods of treating clubfoot (also known as Talipes), but specifically the Ponseti Method. We are here to get the word out and to support each other through the various stages of correction.

Clubfoot Shoe Exchange (a facebook group network of US parents who share gently used shoes if insurance refuses payment for these medically necessary AFO’s)